7 Things I Wish I Knew Before Starting Chemo

7 Things I Wish I Knew Before Starting Chemo

susan miller

Chemo drunk is a feeling I can’t justly describe with words and adjectives.

I’ll take you back a bit: It’s December 21 and I’ve just finished my last chemo session at the hospital. I’m home, trying to have a conversation with my mom, but my eyes keep fixating on the velvet glow from a Yankee Candle. She says something funny and I laugh, a few seconds too late.

My mind is soupy and slow, like bisque that’s started to congeal. I hear words but my thoughts are lost in the emptiness of space. I meticulously toil over sentences, calculating each one through my head with the speed of an early edition fax machine. Something metallic catches my eye, the hardware on my mother’s purse, and now I’m hypnotized by how the silver reflects the flickering candle. It feels like my eyes are lost. They don’t know what to look toward, so they find light and drift to it drunkenly. My body is buzzing inside. I’m an old noisy refrigerator.

This feeling is nothing like alcohol intoxication. This is what it feels like to be dying. My cells, both good and bad, are being devoured as the poisonous cocktail of chemotherapy drugs flows through my veins. I’m being brought to the brink of death, just so I can rebuild. It’s war; destroy the enemy with brute force, but the victor suffers the casualties of battle as well.

You don’t want to be left wounded on the battlefield. Chemo is an experience we’re mostly unprepared to handle. My first few times were terrifying and I didn’t know what I was doing or what to expect. So, I’d like to share seven things I wish I had known about chemo before I started.

  1. You should drink so much water during chemo that you will feel like a water balloon. If you can’t drink water, try Gatorade, juice, or popsicles. I suggest you pack a lunch like you’re in third grade and your mom has just let you buy anything from the grocery store. Chemo is time-consuming and boring; knowing that you will have a few hours to sit around and eat whatever you want is something to look forward to.
  2. Ice your feet and toes! I’m shocked at how many hospitals don’t practice this method to prevent neuropathy. My infusion nurse would bring me two buckets of ice water and rubber gloves before chemo. I’d soak my hands/feet for one long, miserable hour during Taxotere (docetaxel) treatment. It’s not fun, but I never had any neuropathy or damage to my nails.
  3. You’re toxic. Your pee and saliva are toxic. The nurse will tell you that you need to flush the toilet at least twice and don’t share food or drinks with people.
  4. Chemo isn’t the only drug you’ll be getting. Steroids, antihistamines, anti-nausea and anti-anxiety drugs are just some of the usual pre-chemo meds. I took Emend (aprepitant), which is a three-day pack of pills that prevents nausea. I never threw up
  5. Dress warmly; hospitals are cold. Bring fuzzy socks or slippers for after your feet get an ice bath.
  6. If your hair falls out, it will start on the 14th day following chemo. And it kind of hurts. It felt like dull needles digging into my scalp. By the time I shaved my head, I just wanted it gone. I also was a little drunk (champagne), because I had a head-shaving party. … Which leads me to my last point. …
  7. You can still have a normal life. I had a party two weeks after my first chemo. I got drunk. I shaved my head. I cried. I sang Elton John songs with my friends until 3 a.m. I was alive. I was grateful. And I’m still alive because I never once let cancer or chemo stop me from living. You’re going to be fine. Drink the martini. Buy the fancy shoes. Keep on living your life, but with a tad more moxie.

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8 comments

  1. Wanda Northam, MD says:

    Ice your feet and hands if you want, and I guess I’d recommend it though it was the worst part of chemo–really, but I got neuropathy after the second taxol infusion and it persists over a year after completion of chemo. But I’m an 18-mo Triple Negative Breast Cancer survivor!

  2. Kathleen says:

    1. Take Omeprazole (Prevacid) twice per day. As the lining of my stomach was killed off and sloughing through my GI tract, the acid was also flushed along, adding to the anguish of my already inflamed and swollen rectal tissue. After the third day, my BM’s (while still soft due to continuous hydration…I drank around a gallon of fluids daily), they were no longer painful.
    2.) Ginger Root capsules are a must if you are easily nauseated, despite the prescribed medications (Zofran).
    3.) If you have to endure Neulasta injections to boost your white blood cell count, access to a jacuzzi is preferable. A daily double dose of over-the-counter Benadryl (antihistamine) will counteract the histamine response. Aspirin will help with body ache.
    4.) Eat. Every four hours, make yourself eat something, anything. If you want chilled shrimp with cocktail sauce, grilled steak and mashed potatoes or whatever your favorite decadent food is…make allowances for it. You won’t feel like eating anything else.
    5.) Sleep whenever you want. Let the dishes and the housework go. If you have family or friends offering to help, LET THEM. This is the only way they can help and show their love. It makes them feel good to show you, instead of just telling you they wish they could trade places.
    6.) In line with #1, keep a tube of antibiotic with topical anesthetic ointment handy for schmearing on your backside. Make sure to wash it off every day with soap and warm water. If you leave it on more than 24 hours, it will cause the perimeter of the area to itch so bad you wish you could scoot around on shag carpeting for about an hour.
    7.) Keep your friends and family advised. They need to know, even if you think they could care less or are too busy to think about you. It’s not true.
    8.) If you Believe, ask for your family and friends (church family) to pray for you, your doctors and nurses. Never be too proud to ask for help.

    • Linda Bressette says:

      I am a 10 year survivor, of breast cancer. It was 7cm on left breast.
      Not a normal CA of the breast, it was a soft tissue sarcoma that landed there……I had chemo for 3 months. The first week I went and had my hair cut. Short so it wouldn’t be tramadic, (who am I fooling?).
      By the 2 nd treatment I was bald, we had a head shaving party…..might as well lose it completely.
      EVERYTHING TASTED LIKE SALT……couldn’t and still do not put or cook with salt. After chemo was done, came the mastectomy and radiation. I was burned by the radiation, had to use sulfur treatments.
      Six months after radiation, I got diagnosed with uterine and endometrial can error. Thought I was done with the BIG C.
      Had complete hysterectomy, got infected and had to treat that.
      Found out a few years later, I have a inherited blood disorder that causes CA. Then few years later had lymphedema show up, then diabetes…….I give up.
      I found the CA in my breast because of self exam.Talk to your Doc please if you have any suspicions or abnormalities.

  3. Marla Johnson says:

    Susan, thanks for the tips. I finished 15 rounds of chemo almost 3 years ago and my neuropathy in my feet has only gotten worse. I went to a large cancer clinic in Spokane WA, and NOT once did the oncologist or chemo nurses say to ice my feet! Taxol gave me neuropathy and as a dancer and hiker, this was the worse side effect for me to get. Another side effect from chemo that never gets mentioned is how acidic chemo makes your saliva which increases your risk of cavities so it is important to create a more alkaline environment in your mouth so I highly recommend Uncle Harry’s alkalizing toothpaste (comes in a 3 oz jar) and mouthwash which you can get on Amazon.com or your local natural food Co-op grocery store. Also, try to get some exercise even if it is just basic yoga stretches or walking out in nature. Your hair does eventually grow back,too.

    • Kurt DeAngelis says:

      Carried around a supply of GinGin gummy candies all the time. The ginger helped get past the nausea. Sleep patterns were obliterated during my chemo … moved ibto another bedroom so that my wife was able to get normal rest. Finally, the chemo farts were diabolical. 🙂

  4. Kathy says:

    I just started chemo this week and I’m already sick. I’m trying to rest but I’m in an awful room mate situation where the noise is so loud I feel like screaming. What to do for stress.

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